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endowarrior877 · 6 years

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Endometriosis and my treatment experiences.

If your doctor thinks that you might have endometriosis, they may offer various treatments to see if that helps with symptoms at first. This is normally offered before any surgical treatment/diagnosis' are done but as the only way to diagnose endometriosis is by doing a laparoscopy sometimes it can be a long wait for woman before they get to that stage. This prolongs the pain and symptoms woman suffer greatly and impacts on a woman's day to day life.

On average it takes around 7 years for a diagnosis which is a massively long time and can cost some woman years of their lives. Although I did unknowingly waste about 6/7 years thinking my problems were caused by a bowel issue, from the first time I spoke to the GP about the possibility of me having endometriosis to my actual diagnosis from laprascopy in October 2016, the whole time was just over a year and a half. I could spend hours thinking if only I'd have known about this condition earlier then I could have saved myself some pain and time or if doctors would have picked up my symptoms up sooner would I have suffered any less? Too right i think more education should be offered to trained medical professionals and the general public because this disease is actually more common than people think. If we all knew more about it maybe it could save woman so many years. I can't get those years back but other woman don't have to give up so much of their precious life. Thinking about the what ifs and buts won't help my current situation so there's no point dwelling on it. It is what it is. I am lucky in the sense that as soon as thought I had endometriosis I made it my mission to at least push for the laprascopy for answers and not just try treatments. I still don't quite think It makes sense to try and treat something without knowing if it definitely is that for sure. I got my answers after surgery but sadly didn't expect to have to still fight for a pain free life but there you go. Can't have your cake and eat it I guess!

It's crazy and upsetting to think that I'm not the only one living like this crazy nightmare and that there are so many woman out there just simply surviving and not living due to being in constant pain. As well as having a good understanding of my condition, I have a very good support network especially hubby and it has at times been a team effort in the quest to getting me my life back. So down below are the treatments I've tried with some general info and how I found them. Remember what has worked for me may not have the same results for someone else and the same for anything that hasn't worked for me, it could be great for someone else. In most cases some of the things on here do work for a lot of woman and their endometriosis is manageable. Endometriosis is completely personal and unique in each case so we all react different to treatments. Making sure you have done plenty research on what you're taking is the best way of really knowing if what you're taking will actually help and why or why not.

The first treatment I was offered was birth control pills. These types of meds are for usually used for contraception but over the years the pill has been used to treat a range of other conditions such as: irregular periods, polycystic ovary syndrome, migraines, acne and of course endometriosis. The pill has been used for decades to help with endometriosis and although birth control will not cure the disease, taking this back to back and not having a break for 7 days every 3 weeks can help lesson symptoms.

Unless you are using the mini pill most types will contain both progestin and estrogen. These hormones are something your body creates naturally. The pill taken continuously through out the month will stop your period. It is advised to let your body have a period every 3 months for a week. This can be an effective method to relieve symptoms but it didn't help for me. Hormonal treatments haven't worked for me mainly because I believe the endometriosis I have in my body is feeding itself as it produces its own estrogen. My periods did stop until it was time to take a week break but i still continued to experience pain including when moving my bowels, i suffered bad migraines, really bad acne, weight increased and it effected my emotions.

The second treatment i tried was a course Provera and I didn't last long on this one. This is taken in the form of a tablet and is basically just progesterone or progestins and works to decrease the estrogen in the body. This was prescribed before I had my official diagnosis. I'm not sure of my exact dose but I started on the highest and cut that in half after I was experiencing some not nice side effects. Some of these included migraine, sickness and leg pains. All in all I lasted a month on this treatment but the side effects were almost as annoying as my original symptoms so I was put back on to birth control instead. This can also be given in an injection form and belongs to the same drug family as the implant that goes in your arm and the Marina coil.

After the failed Provera I was referred to the gynecology team at my local hospital to see if they could help. As I was already known from my recent pregnancy I didn't need to do any introductions we just got straight down to business. It was suggested that because of my c-section and no obvious signs of endometriosis being found then, there was a good chance that this was in my head and my mind was tricking my nerves into thinking that they were feeling pain. Somehow my mind had got into the habit of making me feel the worst imaginable pain possible. Yes I know this all may seem a little odd but that's what I was told. Lucky for me there was a drug that would help my mind stop telling the nerves they were in pain. This would be treatment number three and was Amitriptyline.

It wasn't very nice the feeling I was being made out to simply have all of this in my head and it seemed so far fetched that my mind could cause this much actual physical pain. There was no denying that in the middle of a flare I was in a lot of pain, but was it only happening because my nerves were damaged from previous pain episodes and were simply stuck in the habit of causing me phantom like pains? This particular drug isn't a pain killer and can be used for a range of problems and can be an ideal solution for some people. It wasn't in my case which was disappointing. I knew people on these for other things and they helped so I did think they might be good.

You have to build up a tolerance with this medicine, it doesn't just work after immediately taking. I waited 3 weeks and was always super tired. It was great at bed time because I could fall asleep so easily but when the morning time came around i struggled to get up and could have slept all day if that was possible. I slowly increased the dosage up to 3 tablets a night at the recommendation of the doctor but as a result was so tired and groggy in the morning. It hadn't done anything for my pain, especially bowel movements so after another appointment to complain about my pain levels, I was passed on to the endometriosis specialist team in a different hospital over an hour away to see if they could help. During this time I was told to stay on the birth control and Amitriptyline. I really didn't feel it was necessary to take something and feel the same pain and other additional symptoms so I weaned myself slowly off the amitriptyline and felt better after I stopped taking it. I stayed on the birth control until i could see the specialist. Playing with my periods like that would always cost me In pain so keeping that the same would save me any additional flares and pain.

I saw the specialist and was very happy at feeling like I was being listened too for once. He didn't dismiss my pain or tell me it was in my head. The fourth treatment I had was a diagnostic laparoscopy with removal of endometriosis if necessary. Unlucky for me it was necessary and they removed some of endometriosis they found and sent some away to be tested which came back positive for endometriosis. They couldn't remove it all and some still remains on one of my kidneys and I'm pretty sure I have some hiding in my bowels, bladder and possibly other places too eg the pouch of Douglas. In terms of pain management it did and didn't do anything. The easiest way I can explain it is like this; Its like I have blankets of pain on my tummy. The lap removed 5 of the pain blankets but left about 10. Some areas especially in my left side where I did have lots pain has gone down since the lap, but others areas of pain have stayed and got much worse mainly on my right side and center.

When you have a laparoscopic procedure you are put to sleep and then holes are placed in your tummy then gas and cameras are inserted through the tubes. The gas opens and lifts your body allowing the surgeon room to work and look around with the cameras. The cameras are there to look at the parts of the body and find any endo. Any endometriosis is then cut away or an later depending on the surgeon. If endometriosis is left or ablated this can sometimes be an indication that you need a surgeon with more expertise. That isn't a dig at the surgeon with less knowledge in any way. It's just that endometriosis is a highly complex disease and needs to be tackled by someone who fully understands it inside and out. An endometriosis specialist will have done further education and training than a standard gynecologist and in more cases isn't specialized in endometriosis. This is why one of the most important things to do in order to deal this condition is have a doctor trained in that field.

Sometimes endometriosis is burnt away with ablation but in order to stand a real chance and live a somewhat pain free life, it should be cut out at the root always. This is better as it removes all of the unwanted cells attacking the healthy parts of the body. Hysterectomies and removal of ovaries can be done during this procedure too if necessary. Recovery time is so important and if you're booked in for a lap please make sure you rest up after. Although it may seem like it's just tiny holes in your body, they are there so that the surgeon didn't have to cut you open from hip to hip. If the laprascopy is done by a trained endo specialist then there is a real good chance that surgery will be a complete success and will greatly improve the patients quality of life. In 80% of cases woman were living pain free lives, the other 20% was missing endometriosis because it can be hidden anywhere. It's been found on the lungs and brain. Ablation surgery to remove endometriosis simple isn't good enough and it will just grow back causing pain if it isn't completely removed.

I kept going back to the specialist after my laparoscopy because the pain had not really settled and was ruining my life still. Before my laparoscopy I was offered the Marina coil to stop my periods and try and help with my pain. This would be my turn out to be the fifth treatment I would accept to try and help me. Having had a bad experience in the past getting something taken out of my body (the implant in my arm) i was terrified of getting anything else placed inside me and then years later the dreaded removal. I was also not sure what was going to happen and be found during the procedure as every test for anything I'd ever had always came back negative, way way back to the first tests so I didn't have much hope and kind of thought I would go throughout life not knowing what was wrong with me. If you throw in a hand full of doctors saying it wasn't endometriosis compared to the couple that did think it was and I was now questioning myself wondering if they would really find anything. I wanted to know the results before I made any more decisions. I'd taken so many unwanted medicines and this one in particular was not as easy as just taking a pill. I'd be getting something inserted into my delicate cervix. So I panicked and said I'd decide that when I knew my results.

Looking back If I'd have know how much pain and discomfort it was going to cause me just going in, I'd have definitely got it in when I was getting my laparoscopy, asleep and blissfully unaware. Saying all that though, if I'd have known I was going to bleed long and heavy all of the time, have different cramps to experience, different flares and the additional pain the next day if I'd had sex, plus all my usual symptoms, then I most definitely would have told them to keep it away from me full stop! I'll be fair though the Marina coil did stop after dinner flares and flares when I passed gas as I am getting them more frequently since it was removed nearly 3 weeks ago.

The Marina coil is progesterone drug that is placed internally inside the cervix for upto 5 years. Someone woman do have to have it replaced every 3 years because it becomes inactive. It looks like the letter T and is made of plastic. It has cords on the bottom which sit outside the cervix and are used for it's removal. This is another treatment that is also used as a contraceptive but can be used for helping with endometriosis. The coil works in the same way as birth control and provera work in that it stops the body producing estrogen. There are reports of this being a great help to woman but I would not recommend this to anyone. When it was first fitted I bled constantly for months on end. I had a lot more really bad cramps and my mood was horrible. I was angry and emotional most of the time. Supposedly after the first 6 months have passed and the body is used to the coil then your periods should stop and life should be hunky dory. Mines never did and I bled more times that i didn't. I eventually got the coil removed and although my baseline pain and symptoms have more or less stayed the same, I'm not as moody, short tempered or emotional, my acne has gone away already, my hair looks healthier and I'm bleeding less. I used to worry that it had moved, gone missing and/or could pierce my cervix and since its removal I've not spared one second thinking about it so that's been good. The coil was the second worst treatment that I tried. I'm saving the worst till the end.

It didn't take me long to be making another appointment with my GP and specialist after the coil was fitted. I was bleeding very heavily, constantly sometimes having to change my pad every couple of hours on some occasions and the cramps were pretty much still causing me just as much problems. I wasn't able to leave the house for being in so much pain. After another appointment with the pain clinic it was suggested that I should try treatment number 6 pregabalin which is a anti-convulsant and also is in the same family as gabapentin. These types of drugs effect how our nerves send and receive pain signals and is more pain management than hormonal suppression. You are less likely to get any of the unwanted side effects that come with gabapentin if you take pregabalin. As I'd already explained to the docs I'd been feeling nauseous a lot because of the pain and because I have children i couldn't be drowsy and under the influence of drugs that might effect my mind state, it was suggested i should try pregabalin as there were less side effects.

I started on a low dose, given a prescription and off I went. I did my usual research and just noted that it might make me sleepy and groggy in the morning. It was basically going to work on my nerves and hopefully block the pain signals that would normally go to the different parts of my body. I also read that it was good for anxiety and since I had plenty of that I thought it might be beneficial there and as I'd always wanted to see if there was something to help with that I'd see if it did help and then tell the doctor. I felt pretty confident in trying this.

Once again they worked great at bed time because I was out like a light in no time at all. I slept all through the night, always. Waking up was a different story and I felt liked I'd been drinking for the last couple of days non stop, even though I'd made the decision to cut alcohol out for good because it just did more harm than good. It made my cramps continuous the next day and made me feel so ill. It wasn't worth it. Alcohol is not good for endometriosis and should be avoided.

I continued on with the pills and there was no change in the mornings and I still felt hungover for hours. After the 'morning sickness' had gone it was then time to wait for the flares to come and just try and get on with the day. Pregabalin didn't stop the pains but made them slightly duller and not so intense. It's so frustrating that most things go this way it's like the endometriosis is just to strong and always over powers what ever I'm putting against it. One thing that I noticed was that my anxiety levels were a lot lower than normal and I was having less panic attacks. Maybe the pills were also helping my anxiety so I kept an eye on things and just enjoyed being less worried all the time. I actually think they added to me having slightly less flares and pain during that time because I was a more relaxed and calm. Unfortunately it wasn't worth feeling like I'd drank 4 liters of rum every night so I eventually just stopped taking them. At this point my relationship with the specialist was becoming strained as anything they tried eventually failed and he was running out of things to try. I eventually managed to get in contact with someone in the department to make an appointment and tell them I'd stopped taking the tablets because of the way they made me feel.

Treatment number seven, the Decapeptyl Injection aka induced menopause and is similar to Lupron. This would be the last thing I'd try before I emigrated to Holland. I was offered this 7 months into getting the Marina coil as I was still complaining of pretty much the same pains so this was the last thing really to try. After almost coming to the end of my appointment with the specialist/pain management nurse that I'd arranged to discus how the coil was working, I kind of lost it a bit and said that I couldn't be left in this much pain and that It is so debilitating and I really needed help to try and stop get my life back on track. She went away to speak to another specialist and said I could wait and he would see me.

After a bit of waiting me and hubby shook hands with a new doctor and took a seat. He ran over my symptoms and the fact they still hadn't got any better even after various treatments and said he could give me a 6 month course of Decapeptyl injections that would put me through the menopause and suppress any endometriosis in my body. I was only 27 and had heard about the menopause but barely knew anything else about it. Without even knowing much more about it and because I was so desperate to try anything to stop the pains, I said yes. He wrote me out a prescription and told me to go and book and an appointment with my GP who would administer it. He didn't explain many of the short term or long term side effects, he didn't really go into much about what it would do to me or how it would effect my body. Just that it would stop me ovulating, I wouldn't have a period and wouldn't be able to get pregnant. He said that it would stop the endo and it would just fade away supposedly. If only I'd have done my research back then, I wouldn't have been so keen to jump in. I was pretty desperate though.

I left his room and was keen to get started after I'd done my usual research about what I was taking. Baaaaaad idea and even though I normally try and find actual facts and true evidence based research, in this case everything I read was just horror stories. I had scared myself stupid and no longer wanted to be dragged through the menopause. I put handing my prescription in to the chemist off for as long as I could but after I couldn't handle the pain anymore I gave in and was ready to try this after all. Fuck it, what did I have to loose now? The appointment was booked and after some confusion about who would be giving me the injection I had a date and it was going to happen.

On the actual day I was so nervous. More so because I knew my body was going to change so much and once It was in me, then even if it went totally horrible I'd have to live like this for the next month at least. I was aware of all of the changes my body would go through now and also aware of all the side effects. I was prepared for everything to come, or so I thought. The nurse called me into the room and after a bit of small talk I'm laid up on the bed with my tiny butt in the air ready to take on the menopause, palms sweating and my heart about to jump about of my chest. Wiggle my toes I said to myself.

The needle went in and the pain was intense. Holy shit! I screamed! That was sore!!! I'm sure she must have missed my muscle because boy did that hurt something rotten! Another downside to these types of treatments is the pain you have to go through sometimes just getting the procedures done. It's horrible having to experience a totally different kind of pain to stop the one you feel day in day out. It's so unfair. I cried out loud, sorted myself out and just wanted to go home. I instantly felt something different in my body like a strange feeling had passed through me and it was slightly warm. I left the surgery and started to walk home with so much on my mind. I'd love nothing more than some respite from my own body sometimes. I was going to get a little shock as the first week was absolute heaven. All my pain has ceased pretty much. It was so bizarre but just as equally amazing. I could even go to the toilet with no pains during and after. It was the best week ever.

Slowly the pains were coming back and by the end of the month my pains had pretty much returned. Everyone put that down to the injection wearing off so I was looking forward to my second one, although not looking forward to actually getting jagged with the needle again. I was unable to sit or lay on my right side for a couple of days after the jag, my butt ached. I also suffered really bad hot flashes and night sweets but they were worth the lessened pain I was experiencing. It wasn't a nice price to pay but I could move my bowels in peace and that was just amazing! My mood also changed and I was angry about everything. Everything irritated me and wound me up. I was a hot, angry, sore menopausal beast but my period had stopped which was a bonus! I did learn from this treatment that I experience a lot of pain extra when I'm ovulating and that's one thing the injections did eliminate and makes me think I need to stop ovulating on a permanent basis.

The second injection came and it didn't hurt at all which was strange. I made sure to ask for this nurse every time because she had a good way of finding the right muscle by feeling for it and didn't just use her eye. I experienced more hot flashes, night sweats and even more bad mood swings. I found that slightly more annoying than last month but the lessoned pain was still a lot better so I was willing to deal with the nasty side effects for now. I started to get a little stressed from the random hot flashes and night sweets over time though. I'd not slept properly in weeks and during the day I'd just randomly feel like I'd been set on fire no matter where I was or what I was doing. At 27 it was hard to deal with and no one my age could even relate. I felt like such an old lady, no offense if you're reading this and fall into this category. I don't mean it in a horrible way.

The pains came back quicker each month and it was like the injection was starting to ware off quicker. I continued getting them every month until the last one was due and at that point I'd had enough of the side effects. They were brutal. Life was so hard and the pain was coming back earlier and earlier and by month five i had one good week, 3 bad weeks and going to toilet was pretty much back normal. It didn't make sense, it was working at the start.

Aside from being all hot and angry I completely lost my sex drive, had bad acne, dizziness, migraines, my breasts decreased much to my dismay (I didn't think they could get any smaller they just vanished though!!), my hair thinned and my bones and joints were very sore by the end of the treatment. My shoulders hurt so bad! I still have sore hands, wrists and night sweats even though it's been months after treatment stopped. For me what I've learnt from this is this drug is just like poison and shouldn't be used at all to treat endometriosis. The side effects experienced are much worse than the original symptoms and some side effects are irreversible like bone density. Bone density is the most common serious side effect and unfortunately can not be reversed.

This treatment is not meant to be a long term solution and should be only used a max 12 doses per life time. Basically this drug works by stopping the body producing estrogen by blocking signals being sent to the pituitary gland in the brain. If you don't produce estrogen then you can't ovulate. It can be given in monthly, 3 monthly, daily injections or as a nasal spray but they all work the same. Other uses for this medicine include: prostate cancer as a chemotherapy drug, fibroids of the uterus and premature puberty in girls under 8. When using to help treat endometriosis 'add back medication' will be added in conjunction with the injections which will give you a little bit of a synthetic version of the missing suppressed hormones to balance the overwhelming side effects found with being catapulted into the menopause. In my particular case this made my symptoms so much more worse so I didn't last long taking those. Surprise surprise! My cramps were 24/7 whilst taking these pills and I seemed to cry a lot too, like all the time. As soon as I stopped taking them those particular issues eased up too.

Everything continued to not work as well as any of us had hoped for and I think if I'd had of stayed in Scotland then i would have been looking for a new specialist as there was nothing more this particular one could do for me I felt. Again I don't mean any disrespect to the doctor. I appreciate how hard he has worked to get where he is so I don't ever want to come across as if I'm dismissing the mountains of knowledge these doctors do have.

I've tried a lot of things after being recommended them by the GP, gynecologist and specialists. I've also tried a lot of things at home by myself. I've tried acupuncture. This was very relaxing but didn't stop the flares. I couldn't afford to keep doing this and since it only helped relax me and not cure me of my pain I couldn't justify spending the large amounts of money. I've also tried meditation and yoga. Again they are very good at relaxing my mind but don't stop the physical pains I feel. I've cut out caffeine, alcohol, processed foods and dairy. I'm still working on gluten but very rarely eat red meat. I have also tried omega 3 fish oils and found that if I stick to a strict diet, take vitamins and omega fish oils I can bring my pain levels down slightly. Again it's not enough to just say it actually helps and I'm cured but I do see a difference in the levels of pain felt if I go super healthy. When your miserable and depressed and bleeding constantly it's hard not to grab a chocolate muffin to drown your sorrows and by pass the salad. I also find that drawing is a great way to relax if I've had a bad day and found that I'm actually not too bad at it if I concentrate.

I've also just got into playing around with essential oils. Frankincense is one that I have read is good for endometriosis and also lavender. I've had fun making bath bombs recently and using them in my diffuser after I've had a flare to try and take my mind off things and relax me. It all makes dealing with the pain a little easier and keeps me occupied when I'm not in pain and able to do something crafty. I also found some CBD oil in my local chemist and tried that a few times. You put 3/4 drops under the tongue and it helps a range of ailments. I did noticed a difference when I first started taking it but I think I need a stronger dose and they get pretty pricey when you move up strengths. I only got this one as it was €14 but I don't think I can throw $80+ at it just yet. It's annoying because you kind of have to just buy it in order to see if it works. I'm still doing research on that though. I did find if I doubled the dose it would help more but I started to feel sick shortly after taking it so haven't touched it for a few weeks. I hate adding sickness on to the cramps.

I'm not quite sure what this new specialist will suggest after my MRI results come back. I'm not going to spend any time thinking about and all the possible outcomes as I have no idea what he will say because it's so different here. I might get lucky and offered surgery. Who knows? I've told him I don't want to try any more hormonal treatments and I think the best way forward is to have a second laparoscopy but until i have my MRI there's absolutely nothing I can really do but wait. I can't and don't want to do any of the treatments again that I've mention above because one way or another they just cause more harm than good so I'm hoping that's not something that's suggested. We will see in due course and I'm sure I'll fill you in on how that goes!

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